Advocate Series: Doctors

When it comes to being an advocate for your preemie one of the best (and often frustrating) resources you will have is doctors. You will often have various specialists involved in your preemies care. Every doctor has an opinion or a way of doing things. The key is to find out how to work with all of them in order to get the best care possible for your preemie. So this part of the advocate series is devoted to doctors. There will be three parts including general tips, practical advice and specific ways to get the most out of your team of doctors.

General:

Ask Questions. It is your right and your responsibility to ask your doctor questions about any procedure, medicine, test that they want (or don’t want) to do on your preemie. Make sure to ask the “who, what, why, where and how” questions. This will give you a better idea of what they want to do so that you can make a more informed decision.

Do research but use it appropriately. The internet and message boards can be a great tool for giving you as much information as possible when it comes to various issues your preemie may face. If can be helpful to better understand what your doctor is talking about or to find new options. But a word of caution – spending 5 hours on Google does not take the place of an medical degree. Use your research wisely. It can help you suggest something new or understand why they want to do something. If you read something that indicates your doctor isn’t doing what other doctors have done for other preemies than ask.

Ask for time. If you are being faced with making a decision about a procedure, surgery, medicine, etc and you aren’t sure about it, ask for time to discuss it and decide. There may be times when this isn’t possible however a doctor can usually give you some time to really be comfortable with a decision before moving forward.

Follow up/follow through. I’m sure you have heard the old adage “the squeaky wheel gets the grease.” This can be very true with doctors – especially in the NICU. If you have more questions or if you feel like something isn’t being done than ask. And ask again. On the flip side – do it appropriately. We were told that line in the NICU for our son so we would ask to see the doctor every time we came in but we quickly realized that the doctors didn’t really have an important update and we were more annoying than anything else. Also, if it is something small that you are worried about than bring it up but then give them time to fix the issue. Don’t expect an instant response to everything.

The Ultimate Goal. For preemies there are often many specific goals they need to attain such as eating orally, weight gain, getting off oxygen, going home, etc. Sometimes it can appear like nothing is being done to accomplish those goals or the amount of time/steps it would take to get there is too much. So find out what the ultimate goals are for your preemie and more importantly, have your doctor outline the steps that it will take to get there. Sometimes when you know “the plan,” it is easier to see when and why things are being done. For example, some preemies that go home on oxygen end up getting the rate increased at first rather than decreased. This can be frustrating for parents because it seems like an unnecessary step backwards. Often times it is actually paving the way towards weaning off oxygen. For weight gain – find out exactly how much weight they want your preemie to gain and what they are doing to get your preemie there. Or what you should do to get your preemie there.